Guest Post - Tara

I asked Tara to share her TOS story with us because I’ve appreciated her hard won knowledge and encouragement (in the TOS facebook Support Group), and I’m sure you will too.

I asked Tara to answer the following questions for us:

1. How did you come to learn you have TOS?
2. What treatments have you tried?
3. What is helpful to you now in living with TOS?

I just had to put this part of Tara’s response here at the beginning-it is so important I wanted you to catch it right away…

“Try to avoid toxic people and encounters whenever possible and learn who your real friends are. You will need them. Our lives may feel diminished, but learn what you still have and embrace it.”
~ ~ ~
“It appears I was born with all the elements that predisposed me to developing Thoracic Outlet Syndrome.
I have two cervical ribs as well as elongated C-7 transverse processes on both sides. The only indicators I had growing up were heaviness and loss of strength in my arms when doing overhead activities like swimming or arranging my hair or fussing with my blankets in bed.

Ironically, I was exceptionally strong, easily doing necessary things like chopping wood and hauling water from the spring near our wilderness home. I don't recall suffering any ill effects from those "arms down" activities. Straight and strong, I didn't notice my posture changing until I was about sixty years old. By then I had gone from slim and buxom to plump and heavy bosomed. My body had gradually curled forward from the extra weight.

Everything came crashing in when I was working with a rather large three-year-old boy, who had to be contained over an eight hour shift. He jerked and pulled and twisted my arms the entire day, while trying to escape--wanting to harm other youngsters in the room. At the end of the day, my arms felt as if they were dislocated--weak and painful. Sleep became nearly impossible, because almost any position I lay in, my hands would lose circulation and start throbbing. I reported the injury to my supervisor.

I was diagnosed with a shoulder impingement and sent to physical therapy. Unfortunately, the type of therapy I was given was the worst type to be used for TOS. My work-outs included exercises with weights, therabands, and an arm bicycle. While the impingement improved, a deeper pain began to develop, sending shooting pains down my arms along with burning, tingling, and numbness into my hands.

When the sports medicine specialist I was seeing declared himself stumped, I told him about an EMG I'd had a few years earlier which had shown nerve irritability. The neurologist had told me about "Droopy Shoulder Syndrome" and said I had the body type for it. Looking up the term on Google, I'd learned of TOS.
My specialist snapped his fingers and said, "That's it!" He ordered a new EMG, and an MRA, then referred me to a local surgeon whose wife has TOS. The tests showed compressed veins, and True Neurogenic TOS was diagnosed. I was rushed into surgery.

Unfortunately, the surgeon I was referred to has a history of being very experimental. The first doctor I saw was very kind and seemed to possess good surgical skills. But his senior partner, who stood in to help, decided to try a different surgical method. The records were falsified to say the surgery had been done as I was told it would. A year later I was back for a second surgery on the left, as I had gone bi-lateral. The second surgery was disastrous! From all appearances the senior partner left early and turned me over to his students. Falsified records said, "complete rib removal and scalenectomy".


Nothing resolved correctly and it took two more years to find and be treated by a TOS specialist, Dr. Dean Donahue at Massachusetts General Hospital in Boston. Dr. Donahue's special contrast CT scan, imaged my cervical ribs and the terrible surgical techniques used on me previously.
Since our first meeting in 2010, Dr. Donahue has performed clean-up surgery on both sides and identified the combination of issues involved. I have "true neurogenic TOS" with classic Gilliatt-Sumner Hand--nerve damage and wasting muscle at the thumb base. The elongated C-7 transverse processes sent fibrous bands into the scalene triangles, where adhesions clamped them to the scalenus minimus (small, extra scalenes )-trapping the arteries between them.

With just chunks of both first ribs removed, the prior incomplete surgeries left the periosteum/bone casing's cut ends drifting. Those casings caused a healing response from my body and new bone regenerated in them-like it would from a fracture. The anterior scalenes had also been cut and left drifting until they met and attached to those loose bone casings. From that response, a sling formed across my brachial plexus on each side and then adhered to each pleura, creating new compression. The repair surgeries were lengthy and difficult--the one on the left was not enough to reverse all the nerve damage. I am left with weakness and loss of function in that hand.

The right side was especially bad, with the brachial plexus wrapped twice in thick slabs of scar tissue. Despite the surgery taking 4 1/2 hours, the damage has been significantly reversed and strength is returning to the hand.

Workman's comp has dogged my every step, with adjusters stalling my medications and procedures. In spite of that, I have tried PT, lidocaine injections, Botox, radio-frequency ablations, intermuscle stimulation (IMS), aka dry needling and numerous medications. The two most beneficial treatments have come from my manual physical therapist. He has pioneered some gentle stretching methods that are especially easy on TOS patients. He also learned manual lymph drainage (MLD) and dry needling therapy (IMS) which when used in conjunction work miracles on my trapped lymph build-up.

Living with TOS is especially discouraging, knowing it is for life and will not be cured. We need to develop arsenals of pain-relief methods--each will be as individualized as the people developing them. Many pharmaceutical medications have been tried, but nothing has proven especially useful to me. Things like Cymbalta and Lyrica are caustic to my gut and I have had to eliminate them from the list. At present, I use Wellbutrin and flexeril in conjunction with curcumin/turmeric and several vitamins and supplements. They seem to take the edge off daily pain. Soma helps when I can't sleep.

Distractions are very important and I use them frequently. Books, movies and music all help me to switch focus from pain. Travel in general is pleasant, but my very favorite is road-tripping! My tens unit and infra-red lamp are soothing, frequent companions at home and on the road.
I try not to dwell on my afflictions or tell my lengthy tale to everyone I meet. Just accepting that we have TOS can help us move forward.

Getting the best medical help you can afford is primary, but you may have to hire and fire several doctors before you find someone truly helpful. A TOS specialist can be beneficial if s/he has more in his/her lexicon than surgery. Pain specialists can also help, if you are willing to be experimental. You may find that your best and most consistent help comes from your trusted GP.
Devise coping methods that help get you through and learn what you can do to normalize your situation as much as possible.
Learn to respect your new limits and ask for help.”

~ ~ ~

Thanks for sharing with us Tara. 

If you have any questions or encouragement for Tara, you may contact her here.

Gentle hugs~

Guest Post ~ Teran

Today’s guest piqued my curiosity when I read some posts of hers in a TOS support group about how she ran a race. What?  A TOSer- running?! 

OK, I have to admit here, I was a bit jealous, and annoyed by her posts. 

“Well, she must not be in very much pain then, might not even have TOS, or else she had a very good outcome postop to allow her to run, because no way could I, or many of the TOSers I’ve spoken with, ever do that. I can barely walk a couple blocks, with my arms bent up to decrease swelling and nerve-tugging pains…and she is running?! “  Those were my thoughts.

I'm admitting those thoughts you to all because I want to keep it real.  It can be difficult to be happy for the good outcomes when years of living with TOS does not turn out as well for you. 

However, since reading Teran’s posts, I've thought about what she shared. I've also recently been sent to physical therapy and am just beginning to have a glimmer of hope some things could change for the better regarding my TOS symptoms, which helped me to be open to Teran’s experience. Her story is relatable to all of us who live with TOS, and is so encouraging to me. I hope it will be for you as well.

Here is Teran’s TOS story~

Hi Teran. Thank you so much for being willing to share your TOS journey with all of us. Tell me, what type of TOS do you have, and what was your journey to being diagnosed?

I was diagnosed in March of 2012 with NTOS (neurogenic = involving nerves).  In January 2012 I began seeing an orthopedic surgeon who specialized in the shoulder, and he ordered tests to find out what was causing the pain. During that time, I started going to physical therapy and was diagnosed by two therapists at the clinic.  I knew it wasn’t good when I heard them both say, ‘TOS’.  I had heard of thoracic outlet syndrome.  A year earlier, I met a person who had TOS so I decided to go home and research it. I thought to myself, "I would never ever want to have TOS.” I went back to the orthopedic surgeon who confirmed the diagnosis.  

Can you describe your TOS symptoms when they were at their worst?

At my worst, I was losing use of my right arm. It progressed to where I couldn't write or use the computer without a lot of pain, and I couldn't lift anything. I remember not being able to lift a gallon of milk.  It hurt to drive, and it was painful to sleep.  I had to stop running, an activity that I loved. It hurt to walk because of the swinging of my arms.  I do have long transverse processes at the end of my ribs which the docs think predisposed me to having TOS, but the injury ( I was reaching back and down behind me with my right arm to pick up a heavy bag) is what caused it.  I had the numbness of my fingers, hands, and arm. I also had the pain and weakness. I also had intermittent stabbing pain. I also had the cold hand. 

What type of treatment have you pursued for your TOS?

I had surgery in August of 2012.  I had the rib resection, pec minor release and scalenectomy, the transverse process (extra rib growth) was not removed.  I do remember the surgeon saying there was a lot of scar tissue. I had various complications after surgery which all seemed to resolve with time.  The post surgery physical therapy has helped tremendously. I still go once a week or once every two weeks. My PT is a manual based therapist who specializes in upper extremity disorders.  It has really worked wonders on me. He starts off with ultrasound, and then massages the area.  After the massage, he stretches and then ices the area. I do stretches multiple times a day, just whenever I need it. It took about 12 weeks for the long thoracic nerve palsy to improve enough to start working out again.

Wow Teran!  You've come from not being able to lift a gallon of milk, and having numb, weak arms to going back to working out and running?!! That is so great.  How did you do that?   I mean, do you think it was just the medical treatment and physical therapy, or are there other factors you think contribute to your doing well?

First of all, I don't think I would be able to maintain an active lifestyle if it weren't for the surgery and physical therapy.  I also wonder if having surgery soon after the diagnosis of TOS was helpful in my recovery.  Secondly, I believe I am a 'half glass full' kind of girl. I have been through many adversities in life and this is definitely one of them.   I have seen different ways the Lord has used TOS in my life, and while it has been hard I am thankful.  In addition to my faith, I have quite a bit of family and friend support.   Lastly, I think it’s important to take one day at a time.  None of us know what tomorrow will bring so we do what we can with the time we have.   

Any thoughts or advice for others living with TOS?

TOS is hard.  We all struggle in different ways and to different degrees, but we share a common bond.  

I do believe that with TOS comes a huge loss that needs to be grieved. 

 I also believe in getting plenty of rest and moving my body. We can't all do the same type of physical activity, but it's important to find an activity that you enjoy. There may be some days you can't do it and may have to rest or find something else you enjoy. I love setting goals, and one of my post surgery goals was to complete a marathon. I tried twice before and got injured both times, but was determined to do it. I found a great run/walk program by Jeff Galloway http://www.jeffgalloway.com/about/ and used it to complete a marathon in April.   One of my favorite quotes is; 'You are not in the waiting room of life.'

I was at my son's flag football party last weekend and was about to start scooping ice cream for 30 people. I asked a friend who happens to be a physical therapist if she could do it for me. She said (no ill intent at all) that I could complete a marathon but couldn't scoop ice cream? I said, "Yep. That's right!".

I may not know or understand why I have gone through certain things, and may never know this side of Heaven. However, I firmly believe that God has used various trials in my life to shape and mold me into who I am today. If I am able to walk alongside someone who is undergoing similar experiences or help in any way, it is good. And I am grateful! I believe we are meant to be in community with one another and it can look different to different people. 

It can be very meaningful for someone to be able to say, 'I understand what you are going through, and I am here for you.'

~ ~ ~

Thank you Teran.
If you have comments or questions for Teran, feel free to email her.

Gentle hugs~

Two TOSers Meet for Lunch - Guest Post - Dianna

Recently, I had the chance to meet up with a fellow TOS-er, Dianna, who lives in my area. Very exciting! We've chatted several times since she saw the listing I posted in a 'Recommended Doctors' file in a  facebook TOSsupport group for the surgeon who treated myself and my two kids.  

Getting the chance to swap stories and commiserate with someone who really gets it, well it's just really refreshing to not have to explain TOS, or be defensive, or put on an I'm fine face about living with TOS. Being able to just be honest about the crap that living with TOS brings to your life is therapeutic, especially when some people in your life can be dismissive or don't even take the time to try to understand what you are going through because you don't look sick.

It was a great lunch. The time flew by as we talked about our TOS journeys. It was interesting to recognize the same neck rubbing, arm movements, pointing to the same places on our backs, arms/armpits, and heads that hurt. 

Lots of head nodding in understanding and agreement as we listened to each other. The only thing I'd change is cushier chairs. We were both sore the next day from driving 40 min one-way, and from sitting for almost two hours in those stiff chairs. If you live with TOS, you understand.

I'm really glad Dianna agreed to be interviewed for today's guest post. 

Dianna developed TOS without having cervical ribs. Many fellow TOSers can relate to her situation. Your life was going along pretty well, you're working hard, or playing a physically demanding sport, and pain develops in your arms, shoulder blade, hands, neck, head, chest...you can't shake it. The ache, swelling, throbbing, stabbing becomes relentless. You get referred to several different doctors who have different ideas about what your problem is, and eventually one of them tells you " you have TOS", and that becomes the beginning of a journey.

Here is a little of Dianna's TOS Journey...

1. What type(s) of TOS do you have? 

I have NTOS. (neurogenic = invoving nerves)

2. What contributed to TOS symptoms developing for you? 

Long work hours with heavy lifting, repetitive overhead work, working in unfavorable body positions. This first picture was from before TOS changed the path of my life. I was physically fit and in great shape. The prime of my life and when plans for the future looked pretty good. Little did I know how much would change.  I'll never be able to do that type of work again, regardless of if I ever recover or not. It would only put me back in the TOS cycle again. Not that we ever really get out of it. I really believe it's for life.

3. What treatment have you had?

I've had trigger point injections, three rounds of physical therapy, and two surgeries. Bilateral rib resections and anterior scalenes removed.

4. How are you now?

I still have a lot of symptoms. 

Notably, my hands turn white when raised in an overhead position, arms still tire, and still have a lot of nerve issues especially if I do any one thing for too long. Examples: sitting, standing, housework. 

This picture was taken right around the time I was first diagnosed. This one reminds me of how much the little things like holding a baby really mean. After this past weekend trying to hold our grandson my left arm feels horrible. It was worth it though. :)

5. What advice would you give someone new to TOS?

Advice I have for someone new- Talk to your doctor right away, research as much as possible, knowledge helps, be presentable to doctors. Write down all your symptoms for the doctor. Don't take no for an answer. Self advocate.

Please let Dianna know if her TOS story is helpful to you, or if you have any questions/comments for her.

I encourage my fellow TOSers to connect, talk, share, encourage, commiserate, vent- in whatever way you are able. In person is fun, via skype, chatting online, email are all great options. One thing is for sure, for those who are on this TOS journey - it sure helps to have others who understand to talk to about it.

Gentle hugs~